In 2014, along with most of the internet, Sunny Brous Erasmus took part in the viral Ice Bucket Challenge, where people dumped pails full of ice water on their heads to raise money and awareness for ALS.
At that point, Erasmus mostly did it out of “peer pressure,” she admits with a laugh.
“Everyone else was doing it, so why not?” the now-32-year-old tells PEOPLE. “It was a good cause and a fun activity to get involved with.”
She was happy to support ALS, but “never in my wildest dreams” did Erasmus think she “would be in that category, ever.”
At the time though, Erasmus, from Fort Worth, Texas, was dealing odd bouts of weakness and exhaustion. She first noticed it in April 2013, when she was playing softball and found that she couldn’t close her hand. Then other issues started popping up — she couldn’t carry as many groceries as usual, and her body felt sore.
“At the time I was running the dorms for the local junior college, and I would just take hot baths all the time and hide from my dorm residents,” she says.
Erasmus started going to doctor after doctor to figure out what was going on, and started off the 18-month-long process of getting a diagnosis.
“ALS is a disease of suggestion. There’s no qualifier, so we had to rule out tons of different diseases before I was diagnosed,” she says. “I had more blood drawn than I knew I had in my body. I had an MRI to rule out multiple sclerosis. I had a spinal tap to rule out Lyme disease. It just takes forever to go around the horn and back to get any kind of understanding and general consensus.”
After the year and a half of back and forth, Erasmus was admittedly relieved when she was diagnosed with ALS on Jan. 20, 2015.
“It’s kind of an absurd thought to some people that I was relieved to be diagnosed with a terminal disease,” she says, but, “I was so relieved to have an answer, even though it wasn’t the answer I wanted.”
ALS is an incurable nervous system disease that weakens nerve cells in the brain and spinal cord, eventually killing them off. And the prognosis is tragically poor, though it depends on the person — the average survival time post-diagnosis is three years, but 20 percent will live to five years, 10 percent will live another 10 years and 5 percent will live 20 or more.
“I’ve met people that were diagnosed and unfortunately were gone within six months,” Erasmus says. “I’ve met people that were diagnosed up to 20 years ago and they’re still kicking ass and taking names. For me, my symptoms when they started progressing, it will be five years since my diagnosis this coming January. I’m still walking. I obviously am still talking. I’m still driving. I walk really slow, and with a walking stick — his name is Phil. But I’m not in a wheelchair yet.”
“Because my muscles are working so hard to perform the easiest of tasks, I’m just exhausted a lot of times, so there’s some days that are out of my control and I just have to lay around and watch Netflix and there’s some days that I just feel like I can take on the world,” she continues.
Erasmus had to stop working a year and a half ago, but she and her husband Kenneth are taking advantage of her more flexible schedule by traveling to places like Cancun and visiting family and friends.
She’s also working to raise awareness of ALS, especially this year, the five-year anniversary of the Ice Bucket Challenge, which raised $115 million for the ALS Association. Though the challenge was dismissed in some circles as simply a social media stunt for many of the people who participated, Erasmus says it brought an invaluable amount of attention and support to the cause.
“These campaigns strengthen and empower this community of people who no longer can talk or walk for themselves,” she says. “It brings this death diagnosis out of the dark and allows those of us that aren’t able to be out or interact with their community to stay engaged and active.”
And by speaking out and sharing her own story, Erasmus says that she hopes “to give ALS a different face.”
“ALS is so commonly thought of as this horrible terrible disease and it is. I’m not discrediting that by any means. But what I think rather than having a pity party, I’ve really been able to embrace the positivity of life and find the good in each day,” she says. “It’s really easy to stay in and be miserable, but I work hard every day to be as positive and optimistic as I can, and I want to help other people in the same unfortunate club see a brighter side of life.”
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